Friday, December 7. 2018

Just started a new case. The patient writes:
"I’m going to describe my situation in a lot of detail because I’m unable to speak so when I see you at our consultation, I won’t be able to tell you what’s wrong in my own words so I figured that this was the best way. I’m hoping that in amongst all these words, you’ll find a little detail that will give you a clue to figure out what’s going wrong.

The current problem started in May 2017 when I injured my head with the metal of my new ear defenders; while I was asleep the thin metal bar dug in very hard for hours right by my right temple. When I woke up, it was numb. I thought it would get better by itself but it just got worse and soon I wasn’t able to lie on the right half of my head at all as it made the numbness deeper and spread. So I was lying solely on my left side from May 2017 to December 2017. If I put any pressure on any of the right side of my head, including touching my head on my pillow, the numbness got even worse.

At the end of December, the whole situation severely deteriorated and the numbness spread to my whole head so that I couldn’t lie down on any part of my head at all without the numbness getting even worse and deeper if I touched my head or neck to anything at all.

I was surviving on only two hours sleep with my head down on my pillow per every 24 hours (every moment with my head touching the pillow caused increasing numbness and reduced blood flow). Any longer and my vision would start to go and I’d start to black out and I quickly had to yank my head up off the pillow.

The sleep deprivation, coupled with no longer being horizontal (I’d been horizontal for over 13 years due to pre-existing illnesses [ME/CFS]), was utterly breaking me. But I hung on and hung on while my mother phoned countless private neurologists trying to get them to agree to take my case on or if they knew what was happening to my head [to no avail].

Meanwhile, in the first few months of 2018, my head and neck situation continued to deteriorate and it was taking 22 hours with me sitting bolt upright with my head tilted far backwards to get a safe level of blood (my gut feeling is that its blood but I could be wrong; it could be cerebrospinal fluid. It feels like blood though) back in my head in order to be able to go down for two hours per every 24 with my head on the pillow without the blood being so reduced that I’d start to pass out.....

It’s at the point now that whatever I do and all the tricks I’ve used in the last nine months of 2018 to get blood moving in my head (I do realise how insane that sounds but I can feel the fluid (blood?) trying to move through the blood vessels (capillaries?) in my head but it feels like it’s coming up against a lot of resistance, like the blood vessels have narrowed/constricted so much that the blood can’t get through them easily. Inside of my head feels like a solid mass that the blood is trying to carve it’s way through/ punch its way through but can’t. Some areas have become impenetrable dead zones as the blood (or whatever is moving around in my head) hasn’t been able to reach them for months.)

It’s been getting so much worse. I haven’t been getting enough blood back in 22 hours to get my head down on the pillow safely for two hours. Even the extreme positions that I’ve been holding my neck and head in for a ridiculous number of hours every day don’t work anymore. It took all my concentration to hold those positions and I had to stay completely still otherwise it didn’t work.

But now my body has completely broken down through sheer and utter exhaustion. I no longer have the strength to hold any position that usually started to get the blood moving after my two hours down on the pillow. My whole body is trembling from exhaustion, I can barely breathe or swallow and I’m struggling to move any part of my body at all.

As of yesterday, I’m stuck no longer able to go down on my pillow at all and I’m going to eventually collapse involuntarily onto the pillow and I’ll be in big trouble then. The sleep deprivation is hell and my whole body is just broken from the last nine months or so. It’s just gone. I don’t know how I’ve kept going as long as I have. It’s taken superhuman effort and steel.

I haven’t let my parents call 999 and go the NHS route because I have very severe trauma from many past abuses from doctors and nurses in the NHS. I have such a severe terror reaction to knowing that I’m going to a hospital or see a doctor, that even when I went to a private London hospital for the MRA scan in August, the adrenaline (or maybe a different stress hormone) was so extreme that it caused the blood vessels in my head to dilate or something because the blood started coming back (not fully but a significant amount) without me even trying and without me bending my neck into extreme positions to get blood back. So by the time I got to the hospital, blood was actually moving in my head and so the results of the scan came back normal-ish (a small arachnoid cyst was found but I was told that it was irrelevant). But when I got home and the adrenaline (or whatever it was) faded, everything went back to how it was before.

It’s so confusing. On the one hand, it seems like it’s the blood vessels that are the problem but then why would the position my head is in, make such a difference?

The results of the upright MRI in February showed a bit of reversal of the lordotic curve of my neck and also showed cervicocranial instability. The position I put my spine (all the way down) does seem to affect a lot whether I can get the fluid moving in my head but I’m no longer able to hold my spine in those positions. I think maybe the EDS means that the ligaments/muscles no longer can hold the spine in the correct position.

I used to be able to push backwards/forwards the bits of my lower and upper spine to make more blood return to my head but I can’t hold my spine in alignment anymore. I have no strength left. My neck does look like it’s curving strangely or has slid off the line of my torso a bit. My head constantly feels like it’s going to fall off my neck because of the CCI. I get huge stabs of pain whenever I try to move my neck at all now.

I can’t carry on like this, especially as I can’t go down onto the pillow anymore. This is ridiculous. My head is so bad, I can’t get the blood moving and I feel encased in thick solid walls around my head, like a thick impenetrable shell. Everything seems so far away and confused. My mental capacity is much, much reduced. It has taken everything to find the correct words in my brain to make sentences in my head to write this.

I don’t know how much longer I can last. I’ll collapse eventually and I’ll be in big trouble. It’s deteriorating so rapidly now and keeping my head off the pillow isn’t cutting it and isn’t getting the blood back. Please help."

No doctor seems to have heard of what’s happening to my head before, especially the numbness/reduction of blood upon any touching or pressure to the head or neck. I don’t know if it’s a mixture of the injury, my spine out of alignment, my blood vessels being weird because of the Vascular Ehlers-Danlos Syndrome or the CCI or spinal neck curve or severe Myalgic Encephalomyelitis (which I’ve had since December 2004) or cerebrospinal fluid leak or what.

This is unlivable. I need immediate help. I’ve been living in such an extreme situation for nine months this year on top of how ill I already was. I have nothing left.

I’ve wrecked my hand and arm muscles, which were already bad, writing this. I don’t feel like I’ve explained anything very well in this email and have probably left out crucial things but it’s the best I can do in the situation I’m in. I’ve written so much detail in the hope that something in there might ring a bell or give you a clue to what’s wrong"Comment:to be continued